Surviving the Holidays with Chronic Fatigue Syndrome and Fibromyalgia. How Do You Do It?

The holidays are a special time of the year when family connections are renewed, but they can be stressful even for healthy people. In my experience, the holidays present two major stumbling blocks for people with chronic fatigue syndrome and fibromyalgia.

The Intense Activity – balancing your desire to be with your family and your health needs – saying no to activity when you’re yearning to do ‘x’ or provide ‘y’.

Confronting Loss – For me, the holidays bring up front and center the losses experienced with this disorder. There’s the loss of the person you used to be (and wish you still were) and perhaps the loss of family connections. Confronting a family that hasn’t been supportive or being so estranged from your family that you’re not going to see them at all would be difficult. Not being able to socialize, being stuck in the house, etc., particularly rear their heads during the holidays.

The only times I’ve cried during this illness occurred in the first ten years after family gatherings when I smacked up against how much had changed for me. It was painfully obvious I wasn’t that witty and energetic person anymore. Things that had been easy before were difficult and awkward. Those types of losses became much more evident for me during family get-togethers than they were during the rest of the year.

I wanted to find new ways ‘to be’ with my family during the holidays, and that’s what this blog is about.

Examining your expectations is numero uno of the excellent suggestions by Karen Lee Richards in her “How to Survive the Holidays” blog. Unfulfilled and unexamined expectations can wreak havoc on our emotional well-being. I realized that my expectations of who I should be in family settings still largely derive from when I was healthy.

Unrealistic expectations for how a family get-together should look can also lead to suffering. If your expectations of your family get-together resemble a Walton Family holiday celebration, then recognizing that you’re trying to get your get-together to match that picture can allow you to drop those expectations and just be there with your family, warts and unexpected pleasures and all.

You might ask yourself what unreasonable expectations you have for family gatherings.

Your family has expectations that may need to be managed as well. They may still, in the excitement of the moment, tend to view you as you were and then be upset when you can’t be who you were. Managing their expectations beforehand about what you can do and can’t do, any special needs you have, etc., can smooth the way for a better get-together.

The Meanings We Create – the Identities We Get Stuck With

Toni notes that the identities that we’ve unknowingly assumed often cause problems. These identities can range from ideals: “I’m a hard worker,” “I’m compassionate,” to positive roles: “I’m a lawyer,” “I’m a teacher,” to negative roles: “I’m fearful,” “I’m sick,” and not “my body is sick,” “I’m not strong,” not my body is not strong). Identifying these assumed identities and looking at the meaning we attach to them can allow the meanings – a source of our suffering – to start to drop away, leaving feelings of freedom and relief.

If your identity is being a great hostess, then it’s going to be difficult to be both happy and healthy during the family get-together. You can try and be the great hostess and be exhausted, or you can not be the great hostess and be upset that you’re not.

Two of my identities include being a ‘smart person’ and being ‘a sick person,’ neither of which is very helpful. At some point I apparently decided that being ‘smart’ was the way to survive and thrive in the world. So I’m driven to be smart – and being driven by anything is not fun, plus I’m not as smart as I was – so it doesn’t work as well as it used to. I’m also pained by the meanings I give to ‘being ill’ such as having something wrong with me personally, instead of something having gone wrong with my body.

I find this, like most practices, takes… practice, and I’m not particularly good at it. One quick flip through my identities is not going to do it. It takes work, but seeing how you are driven to act in certain ways, and then being able to let that go, can have astonishing effects.

The Envy Trap and Cultivating Mudita

Seeing siblings progress in their jobs and relationships and life in general while you’re pretty much inert (or sliding backwards) can be challenging at family get-togethers. It can make one envious, a negative state if there ever was one, (and one of the seven deadly sins to boot :)). Toni Bernhard likens envy to a ‘poison’ that crowds out any chance of feeling peaceful and serene. She was able to escape from the hold of envy by cultivating ‘mudita’ – the empathetic and appreciative joy in the success, good fortune, and joy of others.

This practice was so difficult for her at first that it took a ‘sheer act of will;’ in fact, she reported that it felt ‘fake’ to be declaring joy in the joy of others, but after sticking with the practice it worked. Instead of being envious and upset regarding what she can’t do, Toni’s mind now naturally moves to feel joy at others’ accomplishments. What an extraordinary change in her quality of life she was able to engineer by recognizing envy when it came up and then inserting another thought in its place. Now Toni reports she can literally be ‘flooded with joy’ for others.

I practiced mudita at our family gathering this year (it’s already taken place) and it worked. I was able to switch from being upset at not being able to communicate well to feeling joy in watching others participate and communicate. That shift allowed me to enjoy being at my family gathering instead of being upset.

Taking a Stand

‘Taking a stand’ is a practice I got from Landmark Education that gives oneself a say in how things are going to be. I’ve been taking a stand for ‘satisfaction,’ that I’m satisfied no matter what my circumstances are. When conversations in my head come up that don’t comport with that stand, I retake the stand. Toni essentially took a stand for having joy in the joy of others (instead of being envious) when she practiced mudita.

Bringing satisfaction to pain or to poor circumstances seems illogical, but taking a stand for something like satisfaction in the midst of pain displaces the negative thoughts and emotions (‘this really sucks,’ ‘this is wrong,’ ‘this shouldn’t be happening’) that increase my pain. It does slowly lead to real satisfaction and even gratitude. Taking that stand was valuable in relaxing me during the holidays and allowing me to enjoy being with my family.
There are probably loads of default conversations in our minds regarding illness, many following a theme that we are a ‘problem’ or that we’re deficient in some manner. An alternative stand to those conversations might be that one is valuable, no matter one’s circumstances.

Taking the stand that “I’m valuable” opens up new ways and new insights in how to be valuable, and again, it displaces other conversations that produce pain and frustration. Instead of being valuable by being the breadwinner, perhaps they listen more closely or are more empathetic or express their love more.

Others

Prioritizing and delegating (from Karen Richards) – List all of your family’s possible holiday activities, then ask each person which activity they consider the most important (i.e., decorations, big home-cooked meal, baking cookies, visiting with relatives, etc.). Number them in order of importance. Focus your energy on the things that are most important. For each item on your list, decide if there is an easier alternative, if someone else can take the responsibility, or if it’s not really necessary.

Share the workload (from Karen Richards) – You don’t have to do everything yourself. Don’t be a martyr. Ask each family member to take responsibility for part of the preparations. If you can afford it, hire someone to help you clean the house. Pay a student to address cards or help you bake. If everyone is coming to your house for dinner, ask each person to bring a side dish or dessert – then you can just prepare the main dish. Don’t be afraid to ask for help.

Practice Empathy to Those Who Upset You – Try flipping the anger you feel towards someone and practice empathy towards them. Put yourself in their shoes. Try to get at the commitment behind someone’s complaint, and then speak to that. From Corinne Blandino – “I remind myself that everyone is struggling on the rocky road of their own rough journey called life. Empathy immediately puts me in a better place, relieving me of the energy expended with anger.”

Simplify and Find Alternatives (from Karen Richards) – For every item on your “to do” list, ask yourself these questions: Does this really need to be done? Is there an easier way to do it? Try to think outside the box. For every holiday task, try to think of an alternative that would be easier and less stressful for you. Instead of fighting crowds at the mall, do your shopping online or from catalogs. Rather than cooking a big meal, consider having your holiday dinner at a restaurant. If everyone usually comes to your house, ask another family member to host the festivities this year. Be creative and make things easier on yourself.

How Do You Survive the Holidays?

What have you learned about surviving the holidays with chronic fatigue syndrome and/or fibromyalgia?

How do you manage not to overdo? How do you handle being asked (or not being asked) about your health? How do you manage not being able to participate at the level you used to? How do you deal with family members that don’t believe you’re really ill? How do you refresh yourself? Let us know.

About the Author: ProHealth is pleased to share information from Cort Johnson. Cort has had myalgic encephalomyelitis /chronic fatigue syndrome for over 30 years. The founder of Phoenix Rising and Health Rising, he has contributed hundreds of blogs on chronic fatigue syndrome, fibromyalgia and their allied disorders over the past 10 years. Find more of Cort's and other bloggers' work at Health Rising.